Who has used Work Well Foundation's CPET for their disability claim?

Hi folks, We're starting the process of filing for disability through our private disability insurance provider (and social security, but that's a different story right now). A local lawyer who we probably won't be using recommended Work Well Foundation, but others have since recommended a local University hospital and my husband found a private practice that does them in New York. We are trying to determine who we want to use, so I thought I'd see if anyone had any suggestions.

Just to give an idea of what's going on in my mind, here are the cons of using each and feel free to tell me if I'm totally being irrational.

CONS -
Work Well - "Seems" to be ME/CFS focused. Worried that going to a "ME/CFS" place will somehow look bad for insurance? Like that we are just trying too hard to prove something is wrong?
University - No one seems to know anything about ME/CFS in this state so the written report might not be good enough.
Private NY practice - Long way to go for a test, maybe we will look like we are trying too hard?

(While we are aware that this test knocks some people down for a while, if not indefinitely, we don't really see a way around it dealing with our insurer.)

Anyway, who did you use and how did it go? And if you used Work Well, how did that work out for you?

I certainly would not worry about some idiot thinking you are trying to hard when you have a system that is totally trying their hardest to deny you any kind of help or acknowledgement of an illness. and it is only through doing your own research into your health that has led to this approach. so imo you are better of going to those who have the most experience in this field . I wish you luck and hope it does not leave you worse off for to long . in the long run a few days of pem for doing something that helps you long term has to be a price worth paying .

I had the 2 day CPET testing done, I have shared that on this site. You can review it, print it out and provide it to a lawyer and see if the language they use, in combination with other documentation would be good enough perhaps?

GG

Decided to find the thread for you, probably easier for me to find it than you

I went to Betsy Keller in Ithaca. She and her team are very professional and kind and understand ME, and her center is an exercise physiology center, not specific to ME. But ithaca is a trek from most places.

Agree with @alkt that you shouldn’t worry about being seen to “try too hard”. There’s no such thing. You are in a battle with the insurer and anything you can do to prove disability, you should do. They won’t look at it that way either. CFS is not necessarily a bad thing to be putting down on an LTD claim. I was told it was better than Lyme as a diagnosis.

My advice would be to go to workwell since they know the disease and are closer for you.

I used Workwell and had a very good experience. My doctor suggested Workwell when the disability insurance company was clearly unconvinced that fatigue was disabling. They are only about 100 miles from me - seemed a crazy distance at the time but now I know people travel there from WAY far away.

They were both very professional and very kind when I did the testing, and got the report to me very quickly as the insurance company was ready to give me a final no. The report is very thorough and likely useful even if you're not fighting for disability. I'm now "approved" as totally disabled by the insurance company and I think the report will be convincing for social security as well because it is hard data, facts, not my subjective experience.

It took months to recover and it's not clear to me that I really did get all the way back to my pre-test energy. I would need a very good reason to go through the testing again, but I can't imagine where I would be now without the disability income - scary to even think about.

Staci Stevens at Workwell also gave me a phone consultation after I got the report to help me understand it and how I could monitor my energy and start to reorder my life to accommodate my illness. I'm so grateful for the help - she finally got across to me that this approach could help me to build a new normal and live more fully.

I highly recommend Workwell, but if you can't get there they probably know other places that do the specific protocol needed to prove disability.

I never fully recovered either, and I feel the warnings given did not prepare me for that. It impacted me very badly. I often have wondered if there is a way for them to get useful, persuasive data without the patient pushing to maximum effort. May be worth asking that question.